Hi everyone. I recently had an X-ray on my hip as I am having hip pain which causes my leg to give way when I transfer from my wheelchair. I have MS and GCA. The result of the X-ray was Osteoarthritis and “probable demineralization.” So when I saw my rheumatologist today I asked if I should have a DEXA scan to check on things. She asked when I had the last one and I told her I had only ever had one and that was before I started Actemra over a year ago. She looked back at the results of that and said “Oh, it showed you have osteoporosis! Why didn’t we treat it.?!” It turns out that the daily injections are not covered by insurance but the six-monthly shots of Prolia are so she wants me to do those. I asked if it was osteopenia and she said, no. It is osteoporosis. I cant have another scan until two years after the last one as insurance will not pay for it. I have been on prednisone for 18 months now and am just now reducing to to 5.5 mg prednisone and am on monthly infusions of Actemra. I noticed that some people on here have mentioned they are on Prolia and I wondered if they have found it helpful or if they have had any problems with it. Thanks for any information. I have been taking calcium and vitamin D all along but maybe I need to increase the amount I am taking, or switch to a particular brand?? Here in Texas we are expecting temperatures to be in the high eighties tomorrow which will be a cool front after weeks of 100 plus!
prolia and Actemra.: Hi everyone. I recently had an... - PMRGCAuk
prolia and Actemra.
If you are in a wheelchair a lot of the time then you aren't really able to build bone by physical activity and calcium and vit D can only do so much. Too much calcium is also not good, your body only absorbs a certain amount and the rest is pee'd out or forms grit or stones in kidneys or gall bladder,
Prolia has been shown to increase bone density very effectively and they are now aware of the potential problem of rebound loss of bone density if it is stopped and not replaced by something else to maintain the improved bone density. My husband had the injections, it didn't seem to cause him any problems and, like his mother, if there was a problem, he'd have it!
I have had 6 monthly jabs of prolia for over 3 years...no problems. I eat a calcium rich diet...cheese and yogurts. By the way the latest research shows that milk doesn't help.Take vit D3 and K2 (mk7 form)
8f you want more info send me a message in 'chat'
Does that mean that the cheese and yogurt don't help either?
Cheese and yogurt are great...fermented cheeses and unflavored yogurt. Cheddar and fancy cheeses are great. Not processed cheese.
Thanks for the information. I have to take a baby aspirin every day following heart procedure. Do you know if vit K is a problem with that by any chance. It may only be something to watch if one is on heavy duty blood thinners?
K2 is nothing to do with vitamin k. It does no blood thinning. It's ridiculously confusing.
It is involved in some of the clotting cascades but doesn't have a major effect - I quoted the link in a conversation with HeronNS and someone else a few days ago,
oh good to know!!!thanks
Vit K and aspirin have different mechanisms, aspirin is a platelet inhibitor, makes them slippier. Vit K1 is only a factor with warfarin-type anticoagulants and vit K2 is different anyway. As long as you take it every day while the INR is being adjusted and then continue to take it regularly any vit K is not a problem, you shouldn't take it one week and not the next for example.
Thanks for this information I will look for the link you quoted a few days ago.
It is towards the end of this thread
healthunlocked.com/pmrgcauk...
I've given you this rather than just the links because you might find the whole conversation interesting.
The thing about prolia is that once you start taking it you have to continue it permanently otherwise the bone build up is reversed and even goes backwards. So you would need to be sure that is ok for you and that your insurance will continue to pay.
An alternative is alendronic acid infusions which are normally given yearly and for two or three years.
I think at the least you should ask doc which is right for you.
My mum had the AA infusions and was fine. She then went onto Prolia and was also fine. They have to do bloods before prolia, I think its to make sure your kidneys are ok but it may be something else.
Not quite the case - you can use the Prolia to build the bone density which it does and alendronic acid doesn't, it maintains the status quo, and then if you can't or don't want to continue with Prolia you can switch to an oral or infused bisphosphonate to stop the rebound loss of bone density. The infused versions are zolendronic acid, different substance.
Thanks PMRPro. I wondered what the difference was between the two medications and it is good to know you can switch if necessary. In reading about Prolia, I did see that one of the side effects was lowered resistance to infection and wondered if this was a problem adding to Actemra and prednisone. I have had several UTIs in the last few months and had wondered if this was because of. the Actemra. I am assuming the rheumatologist is well aware of this side effect of Prolia, so it may not be something that would be significant enough to negate taking it or the osteoporosis.
Prolia can reduce calcium in blood. It must be checked before each jab. Before you begin prolia they also check kidney function. When on prolia you need to keep a good intake of dietary calcium..from fermented dairy ( milk for example doesn't seem to be a good source of calcium...it is of course not fermented)
Were they confirmed UTIs? i,e, did they do a urine culture? The symptoms of cystitis can be due to several things, not just an infection. Both PMR and pred can cause irritable bladder syndrome and calcium supplements can cause grit to form in the urine - especially if you get a bit dehydrated in hot weather or because of not drinking enough while travelling for example. I had the symptoms in the early days of Actemra, the first couple of times confirmed by a dip and not by culture but I did get abx. Then it calmed down and now I have no problems.
Thanks for this detailed information. The rheumatologist did do a blood test so I assume she is looking at this. Will certainly inquire about the insurance aspect of this. Glad to know your Mum was fine on both. That is encouraging!
The prolia is much more pleasant to take - it is just an injection- takes a minute or so. The infusion of ZA was done in hospital it took half an hour to drip in so not so much fun but didnt hurt and it is only once a year.
In the UK it seems like they have gone onto Prolia cause it can be done by nurse so is so much cheaper. Unfortunately not all GPs know that it is not suitable for everyone. It was fine for my mum who was over 90 by that time, lots of OA, and not able to do much exercise.
Unfortunately when the GP kept nagging about bone density when I started the steroids I gave in and couldnt stomach the tablets so said I would have a prolia injection. It was only the information from this site that made me stop it at one dose. My bone density is normal for age - at least it was, next dexa in Jan. I had to pay for that, no point asking for one, they just say, you're on steroids you need bone meds.
Good luck.
I have had the Prolia injections for a couple of years without problems - much more pleasant than AA, which I had before.
I am sorry i can't give any advice i am on monthly infusion of Actemra and off steroids.I olso have osteoporosis of total hip and femur olso spine,i take fultium d3twice daily and had 3 infusions but not same thing as you have had.Wishing you well.xx
So sorry to read about all your problems and I certainly wish you well too. Thanks for the message.
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